Visibility, speaking out, courage and organization. Forty years ago, these were the things that brought the Orphan Drug Act to life. On Sunday, February 24, across the U.S. and India, over 7,000 supporters gathered in the same passion: speaking out and bringing visibility to the more than 7,000 disorders collectively known as rare diseases, organized under the banner of Racefor7USA and its parent organizations, the Organization for Rare Disease India (ORDI) and Organization for Rare Diseases India in the U.S. (ORDIUSA).
In the U.S., around 500 participants gathered in Washington, D.C., Greenville, S.C., Frisco, Texas, and the San Francisco Bay area in support of the cause. Thousands of their counterparts ran (and will run at more events scheduled until March 17, 2019) in nine locations in India: Kolkata, Bengaluru, Coimbatore, Chennai, Mumbai, Mysuru, Kochi, Thiruvananthapuram and New Delhi.
Speaker and race starter for the D.C. leg, Frank Sasinowski, MS, MPH, JD, reminded runners that by being in attendance, like those who marched in support of the Orphan Drug Act, they were making themselves heard, a keystone to gaining necessary funding and research to the people who need it most. “In my 35 years dedicated to those with rare diseases, there is one constant over all that time and that is that those motivated make all the difference every time,” says Sasinowski, who also serves as Vice Chair of the EveryLife Foundation. “It is the patients, families and communities, as well as those involved in researching and developing therapies that are responsible for changing the world for those with rare diseases.”
After the event, Sasinowski added, “Those gathered at the at the historic National Sylvan Theaterat the base of Washington Monument for ORDI Racefor7 were marching, racing, speaking out and organizing to make tomorrow better for all of our sisters and brothers with rare diseases in the U.S., in India and around the world. I am inspired by the enthusiastic spirit that was so vibrantly alive among all those who came out on Sunday. Namaste!”
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At all locations, patients and patient advocates bore witness to their disease journeys. Some, like Swapna Kakani, who also spoke at the D.C. event, testified to early diagnoses; Others, like Benita Talati, spoke of longer, more difficult roads. Talati, herself, spent 33 years looking for a diagnosis. The average among the spectrum of rare disease patients is seven years.
In her speech, Kakani told participants to remember that, “As you’re walking today, you’re walking for the 30 million Americans (70 million Indians, and about 350 million people globally)... that are diagnosed with a rare disease. Those that have lived with a rare disease for decades, like myself. Those that have not been diagnosed who are desperately seeking answers. Those that fight for a drug to save their life or just prolong it. Those that aren’t born yet. We know one in 10 live with a rare disease, so they will be diagnosed at some point in their life. Lastly, but very important, (remember) those that have passed due to the complex nature of a rare disease.”
Participation, presence and remembrance remained integral to the theme throughout the day, echoed in speeches from Sasinowski, Kakani, returning patients and patient advocates such as Talati, Sara and Deborah Stachkunas, and new faces, like Anagha Sreenivas and Monica Weldon.
The face of the Rare Diseases youth ambassador program, Anagha Sreenivas, Miss India-DC 2018 offered this to those attending, “Take more initiatives. Participate in more activities. There will be several fundraisers throughout the year and the more events you go to the more support you show, it makes a huge difference. The youth are the future and with the encouragement we get from our parents and from all of the adults we can take huge steps. This is how it starts.”
Weldon, a patient advocate and President, Founder and CEO of Bridge the Gap - SYNGAP Education and Research Foundation, spoke about her son’s SYNGAP1 deficiency, how he was one of six known patients in the world with his disease and how important it was to keep fighting for answers and treatments for all rare diseases. “As a patient advocate, I want to encourage you that even if you are one in the world, there is someone out there like you. You just have to keep going,” Weldon said.
The 7K walk/run event was part of the world wide movement during the last week of February (February 24 through 28) to honor and bring visibility to those with rare diseases. Concurrently, in D.C. Rare Disease Legislative Advocates and the EveryLife Foundation organized Rare Disease Week on Capitol Hill in Washington. Prior to the event, Racefor7 organizers called on potential sponsors and caring members of the public to support this neglected community. Dr. Harsha Rajasimha, M.S., Ph.D., Co-Founder and board director of ORDI, ORDIUSA and co-director of the Rare Diseases Systems Biology Research Initiativeat George Mason University and the main organizer for the four-city event spoke with Daniel Levine of RAREcast in the weeks leading up to the race about the importance of community engagement and support for thecause.
Attendees of the D.C. race also heard from emcee Rajesh Gooty, Founder and President of United National Diversity Coalition of America (UNDCA) who made it a lot of fun with his terrific sense of humor. Dr. Pallavi Belurenergized the crowd with her expert zumba dance warm ups while Iyappan Ramanfrom AIMS India Foundation volunteered official photography and videography.
In Fremont, BV Jagadeesh, serial entrepreneur, angel investor and philanthropist flagged the start of the race. More than 200 people attended. After the race, Jagadeesh stated, “The (ORDI Racefor7) event was a terrific combination of education, physical work out and fun and all of that creating great awareness to hundreds of people. I thoroughly enjoyed learning about rare diseases as well participating in the 7K walk. Please help spread awareness of rare diseases by supporting ORDI and its sister rare disease organizations." Other eminent speakers at the event included Raymond Chan of Rare Genomics Institute and manager of rareshare project, a rare disease patient advocate Jesse Marimat for Congenital dyserythropoietic anemia (CDA) and a senior executive from the Biopharmaceutical orphan drugs industry educating the participants about the global cause and the significance of rarediseaseday. Youth ambassador and emcee for the event, Rhea Mitr, energized the racers while popular singer Shuba Gunapu gave a touching invocation song performance, community volunteers Hari Sankararaman and Srinivas Murthy provided drone videos and photography coverage for the gorgeous venue at Quarry Lakes regional park.
Meanwhile, in Texas, Ms. Shona Huffman, Frisco Mayor Pro Tem presided as chief guest and race starter. Attendees heard from local host Gopal Ponangi of Shubham Foundation, Dr. Lavanaya Rudrapantna, DMD, Vice President of the Mallige Kannada Association of North Texas (MKANT), and patient advocates Amruthavalli Kavi and Raghu Akkaraju, caregivers to a child with idiopathic pulmonary hypertension. Dallas area Community leader Dhiraj Kohli volunteered official photography for the event.
Rain didn’t keep runners and presenters in Greenville; runners there heard from Dr. Siddesha M. Arashinagundi, internal medicine specialist from Bon Secours Hospital and Dr. Balasubramanyam M. Krishniah, internal medicine specialist at Palmetto Internal Medicine. Both Krishniah and Arashinagundi reminded attendees how important, events like Racefor7 were, to increasing awareness among the general public. The event was covered by local Television news channel WSPA 7.
Rajasimha summed up the event by saying, “I am truly humbled by the growing support for the cause in the U.S. There were 5 times more of us this year than last. Next year, we’re hoping to have 7,000 people to walk for each of the seven thousand individual diseases we had bibs for coast-to-coast. We can do it but only with community engagement and participation. The race will continue in Boston area in summer.”
ORDIUSA and Racefor7 thank all of our sponsors for 2019, including Diamond sponsor Takeda Pharmaceuticals and Silver sponsors Amicus Therapeutics, Beaini Financial Solutions, BioIT Solutions, Bluebird Bio, Blue Eye Soft, NETE Solutions, SynergyBIS, Ultragenyx Pharmaceutical.
We would also like to thank promotional partners Biobuzz, Global Genes, International Institute of Corporate Social Responsibility (IICSR), International Rare Diseases Research Consortium (IRDiRC), Lead India Foundation, NORD, RareCast, Rare Diseases International (RDI), Undiagnosed diseases network international (UDNI), UNDCA, and WHEELS Global Foundation for their support. Special thanks go to local promotional partners Kaveri Kannada Sangha, Greenville Tamil Sangham, India Association of Greenville, Kannada Association of Greenville, and Telugu Association of Greenville; SFBayArea organizers Srinivas Pattangi Seshadri, Rekha K Narayan and team, DJ Utobia, iWomen’s Net, Ragamala Music Academy, Kasturi Media and volunteers who came out in support in large numbers.
Leading up to race day, RJs Raghu Halur and Ramya Abhijit of BengaluruVoice of Bay Area Radio Zindagi 1170AM from the San Francisco Bay area, RJ Ananth Kumar of Radio Caravan of Dallas TX, RJ Sameer Khera of Bolly 92.3 FM program Gaata Rahe Mera Dil in the silicon valley, provided live radio programs for public awareness and promotion of the event.
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Media Contact: Nara Govindarajan, [email protected] / 571.294.5913
ORDI is a member organization of various national and international consortia such as NORD, Global Genes, IRDiRC, ICORD, RDI, and UDNI. ORDIUSA is a 501(c)(3) non-profit public charity with the vision to foster collaborations between patient advocacy groups and researchers in USA, India and other countries to help accelerate clinical research, trials and therapy access across borders. ORDIUSA aims to accelerate diagnostic odyssey and therapy development by bridging stakeholders between the two countries. ORDIUSA’s mission include:
Connecting patients living with rare diseases in India and USA with patient advocacy groups, with research or clinical trials and international consortia.
Accelerating diagnosis and treatment options for patients with rare diseases through multinational public-private partnerships.
Exchange and mutual co-operation for public health policy development/implementation Such as Rare Disease Policy and Orphan Drug Policy between USA, India and other countries.
Organizing national and international conferences to bring all stakeholders of rare diseases together for debates and discussions.
Facilitate cross-border research collaborations.